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July 8, 2021

When Death has a Stigma

I began imagining my older brother's death when I was 11 years old.  I pictured it in a variety of ways, detailed and tragic.  This was not because I wanted it to happen but because I was a child living in a world of magical thinking and anxiety.  I believed that if I could imagine a scenario in enough detail, it would prevent it from happening.  So I envisioned the phone call and the circumstances eight ways to Sunday.  I understood very little about addiction and mental illness at that age, but I understood the simple truth that my brother could die.  I understood that despite my deep-rooted love for him, most of society would think he deserved it.  I understood the feelings of shame without having the vocabulary. 

 

I had never heard the word stigma back then, but I had felt it.  When I was in eighth grade and turned in a paper with a dirty spot on it from my endlessly messy backpack, my teacher stared daggers at me and asked, "Is this from smoking cigarettes like your brother??".  When he ran away, some of my friends' parents had them distance themselves from me.  I heard that our family could be a bad influence.  I knew the things we were dealing with at home were meant to be kept quiet, I knew people would judge my family and me, and I knew we were alone, the only suburban middle-class family living in the chaos of a child with addiction.  (It was the 90's, and I know now we were far from the only family with these issues, but I certainly believed that we were).  

 

When it comes to addiction and stigma, I could talk for ages about those years growing up and learning it through living with it.  Internalizing it because I didn't have the language to talk about it.  I could talk to you about the kind of perpetual grief we experience when we love someone who struggles with addiction.  The complexities and heartbreak of hope and love.  There are thick granite layers of grief and stigma when it comes to addiction.  If you peel one away, you will find another just beneath.  There is the uncertainty, the constant hypervigilance, the grief over what we imagined as a life for our loved one in comparison to the one we are witnessing, the stigma of what our neighbors think, what strangers' eye gaze tell us, what services we/they need and are denied.  There is also the deep, ugly, complicated grief when someone we love dies from an overdose. It is compounded by the stigma surrounding it.  

 

All of my childhood imaginary tragedies were meant to protect me or prepare me for the day it would happen.  For my older brother, that day (gratefully) never came.  There were many other days.  Rehabs and time periods with no communication or information about his safety, good days that shone some terrifying hope into my heart, and multiple arrests.  He is currently incarcerated, and the grief that I carry in my heart with his name etched into it is a very long and winding story for another time.  The imaginary tragedies were always about my older brother, but the day I had feared and attempted to protect myself from came anyway, with the death of my youngest brother.  

 

He died of an accidental overdose.  I am fighting temptation with every keystroke to tell you all of the details of his clever smirk and the laugh that we all loved.  To explain to you how his addiction began.  To clarify for you that he was sober that last summer and had hope and goals again.  I want to scream from the rooftops that he died of a cocaine overdose that had been laced with fentanyl; it hadn’t been heroin.  I want to tell you that the autopsy found no recent track marks.  

 

With each of these things, I am hoping to justify his life and his death.  To push back against your internalized stigma. But, unfortunately, the more I push back against it and give you these qualifiers, the more I am actually perpetuating the very stigma I rage against.  It lives in me too.  I hate it, and I don’t want it any more than you do, but the hard truth is that it lives in all of us.  It sits next to our racism, sexism, and other biases that we learned without ever realizing we learned them.  

 

When I talk about my brother's death, I tell you he was sober that summer.  I hold that truth like a torch to light the way for you to see his value.  To see the enormity of his loss. Yet, behind those words, I am screaming.  He was trying!  He was sober!  He was reading about inner peace!  He had life goals!  

 

And then I sit back and think about the families whose loved ones did not find any sobriety before their death.  Was my brother better than them?  Was he more worthy of being grieved, of being loved?  Of course not.  Absolutely not.  Every single person who has died from addiction has a story.  They have people who have cried endless tears for them.  People who have loved them could tell you stories with enough details to bring them back for those few moments.  They are all worthy of love, grief, and respect.  Their families deserve the same empathy you would give to someone who lost a loved one to cancer or a car accident.  Death is tragic and painful and should be a unifier rather than a hierarchy.  

 

After his death, we received the obligatory outpouring of cards and sympathy.  Whatever whispered stigmatized assumptions were made, I was out of earshot. Deep in the depths of my own grief.  Still, there were glimpses of the stigma that attached itself like a scarlet letter to my brother’s death.  

 

A day or two before the funeral, I rode on the cool leather of the passenger seat in my Dad’s SUV to the police station.  We were there to speak with the detective who was handling my brother’s case.  The police station was a cold and uninviting place, desks and filing cabinets overflowing with cases.  We were one of many.  We sat across from this older detective, the room was small, and I was sitting so close to the wall on one side that I could have passed for a sad office decoration, just another grieving family member.  Whatever answers we were hoping for would not come from this man.  You could see it in his eyes and hear it in the words he chose.  This was just another overdose; there was nothing to be done.  His life did not matter.  Our eyes were puffy and wet from the tears as we pleaded.  We had his phone; we knew where the drugs had been purchased.  They knew who had stolen his wallet, credit cards, identification, and car (and conveniently neglected to call anyone for help).  Surely these things mattered.  The man muttered his apologies and tried to mask his indifference, but his opinions of addiction and overdoses needed no words to understand. We left with less than we had entered with.   

 

The thing with stigma is that it is often quiet or indirect.  It is there in the look someone gives or the comments they leave on social media.  Most people would never tell me that my brother deserved to die, but some may say “addiction is a choice”; or behind the veil of a keyboard, they will comment, “play stupid games, win stupid prizes.”  I have seen friends on social media post about how people should not be given Narcan if they have received it in the past or call people ‘junkies’ and ‘lowlifes.’  These aren’t directed at me any more than the comments under news articles online are meant for me, but I am there seeing them.  I work in healthcare and listen to providers lament about patients who have addictions in less than flattering ways, and I sit quietly, hearing the judgment and shame they casually give.    

 

I have never been quiet about my brother’s death or ashamed to say that he died of an overdose.  We need to say these words and let people see the humanity that has always existed behind the cloak of addiction.  I let them see me. I let them see my baby brother and hope that it stimulates them to examine their own biases.  

 

Overdose death is not the only stigmatized death.  There is also suicide, HIV, and almost anything related to mental illness.  The families are everywhere.  They hear the comments people make dismissively, they see the body language and the ignorant sentiments left on social media.  To make progress towards better care and outcomes for all, we must look inward at what stigma we have learned and continue to perpetuate.  

 

They all matter.  

They are all missed by someone.  

They are all loved.  

 

The hierarchy is a false construct, and when death has a stigma it is damaging to all of us.  

 

To read more about Overdose Loss, check out our blog post: Anticipatory Grief and Overdose Death

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A place to honor those who have passed away by continuing to share their memories and stories, and to provide comfort and support to the families and loved ones who miss them.  Moving beyond traditional sympathy cards and societal norms to encourage more dialogue, acknowledgement, and acceptance of grief and loss. 
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